#BadgersPartingGifts #ChildDeath #Bereavement #EndofLifeCare #AlwaysLearning #AlwaysImproving


Have you read Badger’s Parting Gifts? It’s a beautiful story book written by Susan Varley that engages children in thinking about all the gifts people share prior to dying, an elderly badger and his woodland friends bring this to life. We shared it as a family when my mum in law died quite unexpectedly, it was incredibly cathartic, Beth my daughter, Mike my husband and I all cried together as we read it, until then we’d ‘held it together’ and got on with stuff that needed to be done. You can take a listen on YouTube here

If I was to have one ask of Susan, the author, it would be to write another book, sharing that you don’t need to be old to die, death can happen at any stage along the life continuum and the person who leaves us always imparts gifts no matter what their age.

In 2017 7653 babies, children and young people died, 21 every day in the UK (ONS Statistics), with 700 of those children dying in London. Reasons include neonatal events, malignancy, chronic medical conditions including chromosomal, genetic and congenital abnormalities, infections and sudden unexpected, unexplained deaths and accidents. Safeguarding incidents are another reason for child death.

We were reminded of #VictoriaClimbie this week by @UKVCF and @lorraine_tinker (another of my Children’s Nursing heroes) tweeted a picture of Victoria’s mum speaking to a conference back in 2008 aiming to ensure that no other child should suffer as Victoria did and that her legacy would not be forgotten.

Children die in a range of places including hospital environments, at home, in public spaces, in hospices and other areas.

Reviewing and the sharing lessons learnt about children’s death is a key priority of the reforms to the Child Death Review process that are being embedded this year across England. From the 1st April we’ll have a National Child Death database in England that will mean all the information on child deaths will be in one place, which will assist in thematic analysis and sharing learning widely. The Child Death Review statutory and operational guidance offers further details https://www.gov.uk/government/publications/child-death-review-statutory-and-operational-guidance-england

The Healthy London Partnership team @HealthyLDN have a programme of support to assist organisations in addressing these changes https://www.healthylondon.org/our-work/children-young-people/child-death-review-programme/ (useful even if you’re working outside London).

Over the past year I’ve had the privilege of working with an organisation where we’ve really worked to improve experiences of care when child death happens. This was driven by the NICE End of life care for infants, children and young people Quality standard [QS160] https://www.nice.org.uk/guidance/qs160 and also the @NHSEngland learning from deaths work https://www.england.nhs.uk/publication/learning-from-deaths-guidance-for-nhs-trusts-on-working-with-bereaved-families-and-carers/

In both of these programmes parents have been directly involved, the voices of people such as Dr Zoe Picton-Howell who tweets via @4AdsthePoet have been powerful and valued in driving cultural change.

Sadly however for families this work hasn’t as yet been universally adopted, as the wonderful charity @Tog4ShortLives reflect https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/policy-advocacy/bereavement-care/  more supp ort from commissioning organisations would be valued. perhaps 2019 will be the year we address this challenge in all areas?

Our local group has brought colleagues from other local Trusts, Universities, Children’s Hospices, Haven House @HavenHouseCH, Richard House @RichardHouseCH, and the wonderful charity Child Bereavement UK @cbukhelp together. This is where I need to give shout out to CBUK’s animated annual report, it’s so worth watching https://childbereavementuk.org/impact-report-2017-18/ Together we’ve planned and delivered study days on End of Life and bereavement care thanks to our local practice development nurses @AnnalBray @brownbec @PaedPDNSRLH and the Trust End of Life Education team, this also focuses on caring for staff which we must never forget if we are to retain professionals who are repeatedly exposed to distressing situations.

We’re also working to adopt the Advanced Care Planning process http://cypacp.uk/

Thanks to @Rosamund1010 and with support of @Barts_Charity any family where an adult dies in hospital and there are children in the family, books are gifted to help explain difficult and upsetting situations. This is wonderful thoughtful practice and is hugely valued by families.

@_4Louis provide us with very special memory boxes to gift to families which are beautiful.

We’ve so much more to do though, one of our most special meetings of the year was when a family joined us to share their experiences, it reinforced why this work is so important. Ensuring families get information such as ‘Information for families when a child dies’ https://www.england.nhs.uk/wp-content/uploads/2018/07/parent-leaflet-child-death-review-v2.pdf  with care that’s kind and compassionate from staff, are the key elements of memories that will remain with families for ever.

Children and young people when they die leave rich and important legacies, those gifts referred to in Badger’s story.

Organ donation is perhaps one element we are talking about more, Max and Keira’s families demonstrate the impact of donation in an incredibly moving short clip

For health care professionals if you haven’t read ‘Follow the child’ by Sacha Langton-Gilks @SachaLG mum of David, or DD as he’s known, here’s a blog Sacha has written on anticipatory grief http://www.icpcn.org/follow-child-blog-anticipatory-grief-sacha-langton-gilks/ I’d really recommend you invest in a copy of her book or ask your Trust/University library to buy a copy. It should be on all university reading lists for Nurses, Doctors and AHPs.

‘Living with Lennon’ is a blog written by Nikki, Lennon’s mum and she talks very articulately about her grief, do follow her @LivingwithLen5 https://livingwithlennon.co

Just this week @Tog4ShortLives tweeted that ‘The #childrensfuneralfund – announced by the government last April – is still yet to be introduced 📻 Listen & share from 2:50:50 for a powerful interview with @carolynharris24 & Alison on why this support for bereaved parents is absolutely vital https://www.bbc.co.uk/sounds/play/m0002r3g it’s a powerful listen that brings to the forefront of our minds just how much families struggle in the darkest of times.

So to end where I began ‘Badger’s Parting gifts’ for me is a call to action, of course as health professionals we MUST do everything we can to prevent child deaths, safe competent care is so vital in this. Whenever a child dies we must use the gift of information wisely to help us prevent future deaths, yet disseminating information, ensuring it gets to those directly delivering care is a challenge, I suspect that’s another blog…. as is the importance of staff care….

So some asks? What can we learn from each other as we prepare for the changes to statutory processes this year? What difference can we and our teams make to the memories of families when the death of a child happens? after all we only have one chance to get this right…

As always thoughts, links would be really valued …..

#Ostriches #Meerkats #Peacocks and #ProfessionalCuriosity


Its been a week of ostriches, meerkats and peacocks, bear with me and I’ll explain….

Did you know that when ostriches are nesting they dig shallow holes in the ground to use as nests for their eggs? They use their beaks to turn their eggs several times each day. From a distance, an ostrich leaning into a hole to turn an egg looks a bit like it’s burying its head in the sand (but of course if they did that they’d suffocate). But ‘looking down’ is something that happens for us all sometimes as professionals, particularly when times are tough and things can seem overwhelming.

A meerkat by comparison offers an upright bright eyed vision, an animal scanning its horizons, looking at what’s ahead, being curious.

I’ve been thinking about how we nurture professional curiosity recently, which is described as having the capacity and communication skills to explore and understand what is happening rather than making assumptions or accepting things at face value, looking out and up rather than perhaps looking down like an ostrich?

Professional curiosity is something that safeguarding boards have written about extensively as it’s often the element that could have been strengthened when things have gone wrong. This is a particularly helpful overview from Brighton and Hove Local Safeguarding Children’s Board (LSCB) http://brightonandhovelscb.org.uk/wp-content/uploads/Professional-Curiosity-Bulletin-FINAL.pdf that I’d recommend, its worth downloading, printing off and sharing with colleagues.

Professional curiosity is a skill that we use every day in our practice in the NHS and beyond, yet I’m not sure if it’s a skill that comes easily to us, particularly if the signals are ‘weak’ https://www.mckinsey.com/industries/high-tech/our-insights/the-strength-of-weak-signals Personally as a child I was taught to ‘do as I’m told’ and rewarded for doing just that, and whilst academically we’re encouraged to analyse, compare and contrast situations to challenge ideas, I wonder if it’s easier to do this on paper than to do it in practice? Challenging, exploring and analysing issues face to face with an individual or in teams is an important part of our practice. These skills to effectively dig deeper, to be curious, to seek understanding through a questioning approach, to listen with fascination, (Michael West’s @WestM61 term, do watch his thoughts on leadership
https://www.youtube.com/watch?v=0RXthT32vcY ) need nurturing. Role models who do this well can be hugely influential in helping us develop maturity in our questioning and listening. Who do you know that does this well? What are the skills they have? It was a joy this week to spend time with Nicki Fitzmaurice do follow her at @nickifitz she’s one of my Children’s Nursing heroes, she does professional curiosity and listening with fascination wonderfully!

And that brings me to Peacocks, I love their beautiful feathers as they open up and show off their vibrant colours. Sometimes however we’re reluctant to shine like peacocks for a myriad of complex reasons. At the NHS youth forum residential last weekend I shared the words of Nelson Mandela to encourage young people to shine and share their stories, their views and perspectives, because when we’re brave, take courage, ‘hold our nerve’ and speak up, it gives others permission to shine too, this was the quote I shared with them…

So my challenge, what do you most identify with, the characteristics of an ostrich, a meerkat, a peacock or something else? I’d love to hear your thoughts particularly on professional curiosity, being brave and speaking up, how do you nurture yourself, your teams and achieve these vital skills?

Can social media help us grow professional curiosity? Here’s a link to some blogs on social media written with colleagues that may be of interest http://www.wecommunities.org/blogs/2307

What’s my role in tackling health inequalities?


I had an interview recently and I had a really difficult question posed to me ‘significant health inequalities exist in this area, what will you do to address this?’ As is often the way I’m still reflecting on the question and wondering what my role as a Children’s Nurse is in tackling the challenge of health inequalities?

The Royal College of Paediatrics and Child Health state ‘Nearly one in five children in the UK is living in poverty and inequality is blighting their lives, with those from the most deprived backgrounds experiencing much worse health compared with the most affluent.’ The State of child health reports and annual updates are worth dipping into https://www.rcpch.ac.uk/resources/state-child-health-2017-full-report The academic giants such as Sir Michael Marmot @MichaelMarmot have written extensively and authoritatively on this and I’d recommend this chapter for a helpful overview on child health and inequalities https://www.bma.org.uk/-/media/files/pdfs/working%20for%20change/improving%20health/child%20health/growingupinuk_may2013_chp3.pdf

At the @TheKingsFund this week Neil Churchill @neilgchurchill of NHS England @NHSEngland took us through the NHS long term plan (LTP) https://www.england.nhs.uk/long-term-plan/ and reinforced the commitment to spread best practice that’s happening to reduce health inequalities across the NHS, working collaboratively with the voluntary sector and other system partners importantly focusing on the unique needs of the person in front of us is a golden thread that runs throughout the LTP. Kevin Fenton @ProfKevinFenton provided the local authority perspective, reinforcing that deprivation drives inequalities and encouraged us all to collaborate on tackling these big challenges.

Which brings me back to my personal challenge so what I can do?

Can I help create more volunteering opportunities for local communities to engage actively with the NHS? We know the NHS is a big if not the biggest employer in local areas and we know that taking people out of poverty with a regular income transforms lives. Volunteering opens doors and increases aspirations. Having recently read Michelle Obama’s autobiography ‘Becoming’ (highly recommended) she talks about the impact of connecting with young people in schools and how it raises aspirations. Do follow @iwill_campaign for inspiration.

I can also engage with schools to promote careers in healthcare, Bev Matthews @bevMatthews_ and Ruth May @RMayNurseDir are doing a great job progressing this agenda. I can work with university colleagues, this week I got out on the wards to meet new foundation degree nurses who are on placement and I’ve also been interviewing potential new students too, it was great to be reminded of this short film by the RCN ‘I am a children’s nurse’ https://www.youtube.com/watch?v=O81ZY9wHhHw We’re also currently exploring ways to increase placement opportunities for students too so that we increase the volume and diversity of placements.

I can promote breast feeding, signpost families to smoking cessation advice, share information on accident prevention schemes, make sure my safeguarding training is up to date….

In my leadership role I can be an advocate, I can share narratives at health and well-being board meetings… but the health service on its own can’t tackle health inequalities a minimum income standard is needed for good health and well-being of children and many families such as those with disabled children or those from BAME are particularly vulnerable …

How would you have answered this question? Thoughts valued!

worth a read too!





from Jessie McCulloch via Facebook

Definitely linking up with other services which helps to identify and respond effectively to health inequalities. PHE have some guidance here:

Click to access Reducing_health_inequalities_system_scale_and_sustainability.pdf

and particularly about inequalities relating to ethnicity: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/730917/local_action_on_health_inequalities.pdf.

I’m a HV too, so advocating / influencing about health inequalities is definitely part of our role. The Institute of Health Visitors can be joined by non-HVs from other roles involving public health & they have a range of resources and evidence summaries, particularly about supporting families with particular needs (e.g travelling families, homelessness) – https://ihv.org.uk/for-health-visitors/resources/minority-groups/

20/2 Children & Poverty Article in Guardian


#ParentPower or #ParentDisempowerment what’s our choice?


I had a teacher, Miss Jones who taught me in Brynhyfryd Junior School, she exuded energy, wisdom and passion, and seemed to dance lightly around the classroom, it was exactly how Pooky appeared on Monday morning as I sheepishly crept in late (due to a fire that had disrupted the tube lines) to a meeting near London Bridge. Dr Pooky Knightsmith (@PookyH) along with Joanna Goodrich (@goodrichjoanna @pointofcareFdn) were feeding back on work commissioned by the patient insight team at NHS England (@Clareenston @RuthElizHudson et al) on how we should gather experiences of children, young people and families using mental health services.

Rightly there was lots of direction on how we could better hear and action the experiences of children and young people, but for these reflections I’m going to focus on the role of parents.

The power of parents has continued to amplify since 1961 when a group of mums from Battersea set up ‘Mother Care for Children in Hospital’ to ensure recommendations in the ‘welfare of children in hospital’ ie the Platt Report (which recognised the importance of parents and that visiting/staying with their child should be unrestricted) were universally adopted in all hospitals http://www.actionforsickchildren.org/history/. Other powerful parent lobbyists such as the National Network for Parent Carer Forums @NNPCF have led important policy change for children with Special Educational Needs and Disabilities (SEND) and @WellChildFams shared the care they provide for their children in the phenomenal @NotaNurse_but campaign which captured the attention of other parents, healthcare professionals and commissioners alike are more contemporary examples of real change-makers.

The spotlight on this current work is with parents who have children with mental health needs. Pooky heard of their frustration, comments shared indicated that they were terrified of ‘making a fuss’ in case that had an impact on their child’s care, they felt professionals held the power, that they were kept in the dark and importantly were an under-utilised resource in their child’s care.

These comments are reinforced in the report commissioned from the Association of Young People’s health (@AYPHCharity) http://www.youngpeopleshealth.org.uk/wp-content/uploads/2016/11/AYPH-Parenting-briefing-11-nov-2016.pdf please do dip in, some of the asks from children to involve parents more are powerful.

Then Friday this week took me to Liverpool to the first national parent conference, organised by ‘Fresh Plus’ (@FreshPlusGroup) the parents/carers of children and young people using mental health services at @Alderhey https://www.liverpoolcamhs.com Parents and professionals from across the country attended, and it was rightly articulated that whilst many more parents wanted to attend they were just too scared to leave their child reinforcing the physical, emotional and financial strain experienced by families.

You can catch up on the highlights of the conference by taking a look at #ProudParent2019. One parent shared ‘I am a Proud Parent, my daughter is 21 now, when she was 14 we didn’t think she’d see 21, she’s made it’. We also heard from siblings asking us not to forget them too.

Parents clearly want to be partners in care, they want guidance, education and training programmes. The @CharlieWtrust has the most wonderful resources for families https://www.cwmt.org.uk/resources please do take a look and share them. Parents also want to tell us what’s working, what isn’t and to share ideas for improvement, yet professionals need to be open and responsive to this feedback and we don’t always create the right culture for parents to do this.

Support for parents is vital either from professionals or peers, to quote Pooky ‘parents are the children’s chief cheerleaders, who are parent’s cheerleaders?’

Are we as professionals involving parents actively/therapeutically in care, valuing and supporting their contribution and providing mechanisms for their feedback, let alone involving them in the commissioning and design of services?

One parent said ‘I don’t need to know everything, of course my child has a right to privacy, but I have a right as a parent to guidance, support so that I can help and do the right stuff’

The conference in Liverpool stated it’s time for #FreshThinking….

Post blog publication:

Mary Busk @marybusk has flagged the #AskListenDo work https://www.england.nhs.uk/learning-disabilities/about/ask-listen-do/ which a really practical way of gathering views from families and then importantly taking action.

Luci Butler @butler_luci asked for #FreshThinking about transitioning from CAMHS to AMHS …

Wondering if Avrind’s #ReadySteadyGoHello work in Southampton would add a more structured proactive approach to transition?


Great to see discussion about these issues online, thanks to Steph for her reflections …

Writing to #patients?


I had the pleasure this week of joining the amazing Dr Arvind Nagra (do follow her on Twitter @arvnagra) at a great study day at Southampton entitled #Movingonup

We focused on moving from children’s services into adult care. There were great presentations that stimulated lively debate, yet one really challenged me, @CharlieTomson asked ‘are we writing directly to patients & copying in GPs?’

Despite guidance from Association of Medical Royal Colleges http://www.aomrc.org.uk/wp-content/uploads/2018/09/Please_write_to_me_Guidance_010918.pdf it’s not happening routinely. Charlie (only his mum calls him Charles) outlined his approach, an understandable summary along with actions for the patient, GP and other relevant people, followed by next steps (see the simple template below from Charlie).

Twitter engaged with the conversation and @LiviBF summed up the impact of being written to beautifully ….

What do you think? Should we make writing to patients an #AlwaysEvent https://www.england.nhs.uk/always-events/

This great blog by @ChrisGrahamUK CEO at @pickereurope explores this further, thx Chris!